12-18 month support

[[Gr...]]

Am I ever glad I do not own a car ... sitting here 12 floors above the mess down there ... got over a foot of blowing drifting snow ... and all those folks, using all that energy to get there cars out ... an interesting distraction this afternoon ...

 

Spending a quiet day with my little corner of stuff ... riding this seemingly endless on again off again wave ... oh well ... at least I don't have to shovel ... 

 

Nova,

 

No snow south of Nova Scotia, just the same March cold and strong wind.  This could go on clear through April.  I hope not.

 

Glad to hear you slept 11 hours.  way to go.

[[Gr...]]

Long, long day of constant symptoms ... feeling pretty far down ... I suppose I am just exhausted from all this stuff for so long ...

 

And there is nothing else to do but keep going ...

 

Set out on this journey some 44 months ago ... been through all the highs and lows ... physically and mentally ...

 

What have I accomplished? ... I got off the drug and have stayed off for almost 17 months ... and I certainly do not need the drug anymore ... perhaps never needed it ...

 

And today ... well, the physical stuff keeps going on and on ... and all the doubt and that whispering fear in the background ...

 

Everything I know, accept and believe says I am on the right path ... and yet, there is still that doubt that I am doing myself harm by doing this ...

 

And I know that is total hogwash ...

 

So, the end of another long boring Sunday ... nothing accomplished ... or that is how it feels ... haven't really accomplished anything in a long time ... used to be good at getting things done, even when on the drug ... I feel I am missing that sense of being whole, being able, being something other than "sick" ...

 

And this is called "healing" ... and indeed it is ... I know and believe that ... and it is taking a very, very long time ...

 

Oh well ... now that I have probably depressed my Buddies ... sorry about that ... just wanted to let myself and all of you know where I am today and what I am feeling ...

 

And ... in time ... this will all be a memory ...

 

 

Nova, nothing accomplished, that is the siren's song when I'm in a wave.  especially when the waves go on so long.  And it upsets the hell out of me.  makes me think I'm unproductive, wasting the time I have left on Earth, etc.  You get the drift.  Funny thing, I don't think I accomplish that much more when I'm not in a wave, but that's the pattern of thinking, anyway.

 

I'm in that place with you, of looking around and feeling the opposite of whatever is a sense of accomplishment.  The only cure I know for this is get out the door, or some form of distraction, or sometimes just a good cry.  And sometimes the frustration of "nothing accomplished" pushes me into action, where I accomplish something "small," and I feel better.  This has been the pattern of these damned waves since the beginning.

 

Hoping this "breaks" for you soon.  I really do think for those of us on this coast, with our weather, spring will be good for us, for the simple reason we can get out the door and get out of our heads.

 

You certainly do have a lot to show for the last 44 months.  You have a life changing event.  You've learned more about yourself and human nature than you ever would have, had you continued "sleeping" your life away.

 

You're tired, Nova, because it's taking so long, but remember, it is taking, and you're going to get there, we all will.

[[dr...]]

Nova-nothing can depress us here re withdrawal unless one of us quits the good fight.  you are not going to do that so you can't depress us.  Eat your damn cookies!

[[No...]]

Green ... and today things are quiet ... head pressure got lost somewhere ... and yes ... once we can get outdoors this will help a lot ... sure did last year ...

 

Good to see you here ... hope you are having a quiet day ... 

[[No...]]

Drew ... I ate the cookies ... now have a sugar rush ... feels good ... 

[[Gr...]]

Hello, everyone.  I guess I'm in a wave.  When sleep deteriorates to I'm not closing my eyes before daylight, that's the wave place.  It's really bad on days where I can't fall asleep for a few hours in the morning.  Better on days like today where I can get that 7 to 11 a.m. nap.  My intrusive thoughts are not so crazy, not so racing as in the past.  The revving and cortisol surges of the last two weeks seem to be on the back burner, hopefully to phase out for a while.  Now, as I just said to Nova, my pattern is I start beating myself up over what I should be doing, focusing on symptoms, where I'm at, with tremendous dissatisfaction, comparing myself to every person on here, and becoming very sour indeed.

 

I'm going to try to bypass that, put one foot in front of the other, recite my gratitude list, things I'm very grateful for, starting with the roof over my head, and try to "accomplish" something at home here, which can be very challenging in a wave. 

 

Coop, you sound great.  let's hope your better baseline holds up for a while

 

Sky, sounding better

 

HH, have a great trip!  I have no doubt you will.  And I'm betting you get a lot of confidence after you do.

[[Co...]]

Nova...and Green...the next time you feel that you are not accomplishing anything meaningful during w/d....please know how huge your presence on this forum has been to my ability to stick with it. I suspect I am not the only one you have helped to stick with it. We are able to find little to no u derstanding, validation or support in the world....you have provided for me what I couldn't find in the world off 'accom0lished' phydicians, therapists, life coaches, herbaluzts, physiotherapists and naturepaths. Your support literally made the difference for me of not reinstating.

....Having said all of that....I totally get the sense of " what did I do today besides putter?"...I do find some

sense of meaning by reminding myself that my most important 'job' right now is to heal. .which is damn hard exhausting time consuming work..

....Green and Nova, thank you so much for the hours in the middle of the night on BBs with me...walking me through panics and doubts....and all the pms answered that got me through one more day without going to er.. .or worse asking for a renewal of my benzo script.  I love you both .. you have made a huge difference in my life... coop

[[Co...]]

Nova, your cookies sound so yummy...I sent my daughter to the bakery for oatmeal chocolate chip cookies...and a decaf latte...here's to you dear friend ....

....and yes when you get a little sun and warmth it will make a difference...even on a bad day. We have had some sun and spring here and to get out in the warmth of the sun is so healing if only in the moment.. Carry on...enjoy you sugar high.  coop

[[dr...]]

yes coop...allowing ourselves the permission to just heal is so hard for me too.  I felt decent yesterday and my gf was performing but I chose to stay home.  I wanted to get out there so much but I had to give myself permission to just be and let this damn thing do whatever it will do.  i do so much during the week with working full time and performing on stage that staying home all the other times isn't a bad thing but it feels bad. 

 

I am feeling the best in a few weeks today and I am hoping the head stuff stays away.  Minor hissing and pressure but a 2-3 on a 10 scale.  Also, my eyes aren't killing me and not much DR so that is good.  I will try to do 20 minutes on elliptical at lunch.

 

coop-i'm going to start taking B2 tonight.  I read several studies on it being a natural preventative for migraines.  As effective as some beta blockers.  In addition very little to none in the side effect dept.  You just pee bright yellow.  Lastly, teh amount needed waas 400mg per day.  i will start low and work my way up.

[[Ha...]]

Cooperten how are ur palps? Gone yet??

[[dr...]]

I had a good day and a good workout until I got another visual aura.  I see spots and jagged lines that move from the center of my eye and out to the periphery until they disappear.  Takes about thirty minutes and no matter how hard I try I panic.  I didn't feed the panic more than the initial rush. Lately no headache to follow which is something positive at least.  I am developing a fear of these striking because I can sense them coming on.  Driving into work this morning a trucks brake lights brightness were bothering my eyes.  Presto six hours later I get hit.

 

What bothers me is that hardly anyone else gets these so I start to worry.  It's my sixth one in the last month.  Oh well...I'm still here

[[Co...]]

Hi Happy...wow...nice to see you here. Yes, for the most part they are. They don't bother me any more at all. In a wave I might have on again off again bouts of them...usually after eating which my physician assures me are gastric in origin. I eat small meals. I don't need my b/p meds at all anymore. Although I find myself carrying them with me when I go somewhere. ( better than clutching ativan everywhere I go) .My b/p is nice ...right around 110-115/70-75. Every now and then I will get a random b/p spike with a bout of anxiety or a cortisol spike. ..My anxiety is much better, but I still get it in waves. My biggest complaint now is d/r, cog fog, motion sensation and health fears.

....How are you doing now?..I hope you are feeling big jumps in healing.  .coop

[[Gr...]]

Nova...and Green...the next time you feel that you are not accomplishing anything meaningful during w/d....please know how huge your presence on this forum has been to my ability to stick with it. I suspect I am not the only one you have helped to stick with it. We are able to find little to no u derstanding, validation or support in the world....you have provided for me what I couldn't find in the world off 'accom0lished' phydicians, therapists, life coaches, herbaluzts, physiotherapists and naturepaths. Your support literally made the difference for me of not reinstating.

....Having said all of that....I totally get the sense of " what did I do today besides putter?"...I do find some

sense of meaning by reminding myself that my most important 'job' right now is to heal. .which is damn hard exhausting time consuming work..

....Green and Nova, thank you so much for the hours in the middle of the night on BBs with me...walking me through panics and doubts....and all the pms answered that got me through one more day without going to er.. .or worse asking for a renewal of my benzo script.  I love you both .. you have made a huge difference in my life... coop

 

Coop,

 

you are such a lovely person.  not many like you walking around out there.  and, yes, we have gotten each other through one more day, a day at a time. 

 

Coop, my mental status is pretty good, I've managed to keep ahead of the depression, stay in "acceptance" mode, and it's a lot of damned work, keeping positive all the damned time, lol.  but I really do have limitations.  Today, for instance, I rode my bike, trying to get some time in the saddle for the cycling trip, and I just don't have any stamina, I couldn't do much.  I didn't get tearful, like I used to, just had to accept it.  Even trying to do a few things around the house, I pushed myself into motion, made dinner, took the trash out, hung a wreath, and that was enough to put me on the couch.  So the mind is willing, but the body is very tired.  and other times the body is revved, but the mind is "frozen."  I'm hoping this passes, gets a little better.  I remember Jenny starting to hike that mountain in her back yard and really "struggling" to do something she used to do fairly easily.  That's how it feels.  A day at a time.

[[mr...]]

Drew,

 

Just Mrs speaking, lol, but...so what? Thousands of folks have migraines. They are completely harmless - although painful, I know.

 

I am NOT trying to downplay your suffering...just trying to downplay the 'benzovoice' that says "Lookie over here!" I hope that I didn't come across as insensitive to you. I sure hope I came across as insensitive to the dumb 'benzovoice'.

 

How are things otherwise? Things are moving along here. Stubbornly, so it may seem. But moving nonetheless whether they want to or not.

 

I'm reading your posts gang, just not posting much. I am here though - a "lurker" so it seems. Amazed that we can feel so "normal" in so many capacities, and "not so normal" in others. In reading so many success stories, many people in this "healed/not healed" phase hit a point where healing just "accelerated" - and then it was done. So, I am believing on faith that we are all on this "brink". We gotta be friggin close, right? I feel like a marathoner who knows they are past 3/4ths done, but yet unsure of where the finish line is. Its still too far off in the horizon to see, and in running so long there are times of doubt that it it even exists or that it will ever come. Okay. So, time to re-tie my shoes, take a swig of Gatorade, and get back to my pace. One foot in front if the other. Chop wood, carry water. (Or is it chop water and carry wood?! Some days I'm sure I do this a bit too!)

 

Okay. Ranting (and panting) done. Off to finish my walk and enjoy some supper with Mr. Love to you gang. We are doing this!

 

Mrs.

[[dr...]]

Mrs.....I'm fine w what you wrote.  I guess it's frustrating because right now the migraines and the visual stuff has become my main symptom thus the benzo voice focus.  If they were gone I'd be pretty good right now but I'm sure something woukd replace it as it has before.   

Heart palps to benzo belly to nerve and muscle pain to migraines.  It's a benzo carousel of goodness

 

I'm not worried about them killing me or anything. I guess I'm wondering if I should try something to control them and once more time has passed try going natural again.  What I mean is seeing a doc and maybe a low dose beta blocker maybe.  I'm trying the B2 first.  There are preventative measures and now that I'm getting so many it might be worthwhile. 

 

That is all. 

[[Co...]]

Hi Green, ...you sound like where I am with stamina, motivation, the mismatch with body/mind energy. Like you, there are so many days I just go through my little routine in rote. Other days I feel energetic, but for me, energetic in w/d is nothing like energetic was before this train wreck. I was awake all night last night too with some chemical anxiety/ restlessness and the ever present health fears. I went to sleep at 330 after getting the dog out and slept until 730. I got up because I couldn't go back to sleep . I took a nap this afternoon but it ended up being a mild toxic nap...but really things are ok. Not a window but a decent baseline ( 80-85%).

.....I 'll be in bed tonight at 730.. It is do frustrating to have to live life on low, but I have to believe it will get better.  We still have 6/7 months to go until month 24. I am counting on big leaps forward in that time.

.....I read your wave sx and ( of course ) they are very much like mine now. I feel like I am in a holding pattern after my 5 days of ' normal and happy' .  I joined Drew's exercise thread, but I was pretty dismal today.  10 minutes of easy yoga and later 10 minutes of strength that I learned in pt.  Pretty much geriatric , but that was all I could manage today.. maybe better tomorrow.

    Green, it's going to get better.. last year just thinking about getting the patio ready for spring was overwhelming with a big side order of anxiety. This year I am looking forward to it albeit through the fog of disconnect. ...

....Green, I think you are the one who is kind and selfless. You come on here and address every single post even on days when you don't feel like it . You have no idea of the reassurance you have provided to me...I hope you sleep tonight ....What would we do without genealogy and Frasier in the dead of the night. ...love to you Green.  coop

[[dr...]]

Oh...hi coop n green

[[Co...]]

Hi Drew, ..man ...sorry about the visual aura..

I get rebound flashes sometimes like when the TV turns off and there is that visual and auditory pop when it goes off ( old kitchen tv)..or if there is a flash of light outside I see it again in my periphery. I also now have the tiny black dots ( like tiny knats) that float around from time to time but only outside. Last summer I was seeing big patches of secondary color patches on the side walk.  If I looked at an orange car I would see big orange patches on the sidewalk. I started wearing my sun glasses all the time. I did go to the eye specialist and he reassured me it is a light intolerance and some "age related" sensitivity and physiological changes ....perfect, I will heal from w/d just in time to take on the gifts of 'aging'... I found it reassuring to see the eye doctor. No medications. ....

.....I know only too well how physical sx set off the health fears. Health fears have been my biggest torture. ...I hope the B2 helps and I am so glad you didn't get a migraine today. You are so right....as soon as we get through one set of sx new ones show up...this is so hard.  I am going to visit your exercise thread later, but I can tell you, I didn't get anything impressive logged in . I love the thread though...see you there later.  coop

[[dr...]]

Drew,

 

Just Mrs speaking, lol, but...so what? Thousands of folks have migraines. They are completely harmless - although painful, I know.

 

I am NOT trying to downplay your suffering...just trying to downplay the 'benzovoice' that says "Lookie over here!" I hope that I didn't come across as insensitive to you. I sure hope I came across as insensitive to the dumb 'benzovoice'.

 

How are things otherwise? Things are moving along here. Stubbornly, so it may seem. But moving nonetheless whether they want to or not.

 

I'm reading your posts gang, just not posting much. I am here though - a "lurker" so it seems. Amazed that we can feel so "normal" in so many capacities, and "not so normal" in others. In reading so many success stories, many people in this "healed/not healed" phase hit a point where healing just "accelerated" - and then it was done. So, I am believing on faith that we are all on this "brink". We gotta be friggin close, right? I feel like a marathoner who knows they are past 3/4ths done, but yet unsure of where the finish line is. Its still too far off in the horizon to see, and in running so long there are times of doubt that it it even exists or that it will ever come. Okay. So, time to re-tie my shoes, take a swig of Gatorade, and get back to my pace. One foot in front if the other. Chop wood, carry water. (Or is it chop water and carry wood?! Some days I'm sure I do this a bit too!)

 

Okay. Ranting (and panting) done. Off to finish my walk and enjoy some supper with Mr. Love to you gang. We are doing this!

 

Mrs.

 

Completely harmless as many symptoms of benzo withdrawal are but still very real and debilitating. So yeah...reading it again "so what" does seem a bit insensitive and I would have taken it that way if I didn't know you so well. 

[[Co...]]

Hi Mrs....Yep, the healed/not healed ...perfect description. ..As always you sound up beat and carrying on. .  BTW...Happy Month 4.....You are sounding really good for month 4. I was a total train wreck in months 4-7.  I am happy to see you in the land of functional at month 4...Mrs, I hope your good baseline holds up and takes you all the way.  coop

[[mr...]]

Drew, I'm really sorry.

 

I was particularly irritated with my own "benzovoice" this evening, that I spoke harshly against yours.

 

I completely understand how you feel, with a particular symptom taking a "front seat". Regarding the migraines, have you checked into supplementing with something called CoEnzyme Q-10? There are some great studies done on its efficacy in reducing frequency and recurrence. I've included a couple of the studies, below, if they can help

 

Efficacy of coenzyme Q10 in migraine prophylaxis: a randomized controlled trial: http://www.ncbi.nlm.nih.gov/pubmed/15728298

 

Open label trial of coenzyme Q10 as a migraine preventive: http://www.ncbi.nlm.nih.gov/pubmed/11972582

 

Myself personally? I never had migraines during withdrawal, but early on I had a sorta low-level headache that stayed with me most of the time. I started taking a high-absorbancy CoQ-10 daily, slowly moving up to 90mg per day (30mg 3 times per day), and it eliminated the headache! It also eliminated about 70-90% of my fatigue as well. I know it was the CoQ-10 because about 6 months later, I ran out for about 1 1/2 weeks, and the headache/fatigue came back. Once I got more of it, the two symptoms vanished again.

 

That is just me and my experiences, of course I know we all are different - feel free to do whatever you feel is best for you, Drew Are you feeling good tonight? I sure hope so. My apologies again for the insensitive comments. Its just been one of those days. I hope we are okay. Thanks for bearing with me, Drew.

 

Mrs.

[[dr...]]

We are okay   Thx for apology.  I read about the cq-10 along with 400mg oh B2.  I've started the B2 tonight and will ramp up over the next few days.  I also made a brief spot w my pdoc on Wednesday.  Any med as a preventative will be last resort but this is getting out of hand.

Thanks for posting the links. Will read now. The headache is getting worse but I have the patented "coop icepacks" on my neck and peppermint/lavender oil on my temples. Ugh!

[[Co...]]

Awwww, Drew.  So sorry the migraine is showing up. I am glad you are going to see your pdoc. I hope it will be another reassurance fir you...Ice /Heat on dear friend. Thinking of you....coop

[[Co...]]

Just in case you are lurking Nova,..hope you are getting some rest and staying on top of the wave.  Have a good night dear friend.  coop

[[No...]]

Coop ... not lurking ... just reading this evening's posts ... catching up ... had a pretty even keel day ... no head pressure ... and I was tired so I shut down around 630 PM my time ... just got up a while ago, around 130 AM ...

 

Ate too many cookies ... and enjoyed every one ...